I'm a mother of 2 beautiful boys. My youngest, Ezra, was born with Recessive Dystrophic Epidermolysis Bullosa.
Having never heard of this before I was overwhelmed with how to care for him and devasted to hear his life would not be normal because of his very fragile skin.
He is 10 yrs old now and he is my hero!
Twice a day he faces dressing changes, new blisters, sores in his throat, on the eyes and anywhere there is dermis. There are many other complications because of E.B: including anemia, contracting fingers and hands, scarring in esophagus just from eating and much more. (He was also this year diagnosed with Diabetes Type 1.)
He is SO brave & full of life and just wants to do what other boys his age are doing.
I am doing this fundraiser to do my part to help raise money for research and hopefully one day (could never come soon enough!) a cure or treatment to help him and all the other children to live a life without pain-without E.B!
Lots of love,
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